Quality of care and service trajectories for people with intellectual disabilities: defining the aspects of quality from the client’s perspective

Abstract

BACKGROUND: Care and service trajectories for people with intellectual disabilities (i.e. people with mental retardations) are routes within the healthcare delivery system that consist of all the steps that people with intellectual disabilities and their families have to take in order to realise the needed care and services. AIM: This article aims to identify the quality aspects of trajectories that are considered important by people with intellectual disabilities and their parents/relatives. In addition, it examines how these aspects are related to quality determinants mentioned in the literature on integrated care and to authoritative models for quality assessment of care and service delivery. METHODS: Quality aspects were collected during eight focus group discussions with people with intellectual disabilities or their parents/relatives. In addition, quality determinants of integrated care and authoritative models for quality assessment were selected by means of a thorough review of the literature. Finally, the quality aspects identified using focus groups were compared to the determinants and models found in the literature. RESULTS: The quality aspects presented by people with intellectual disabilities referred particularly to the immediate situation in receiving care and services, such as 'keeping appointments' and 'time and attention', whereas parents/relatives also referred to broader 'organisational issues', such as 'access to support' and 'problems with placement'. The quality aspects, however, are minimally related to the quality determinants of integrated care, probably because clients and their parents/relatives find it difficult to have an overview of the coherence between the various actions that have to be performed, when going through the trajectories. In contrast, the quality aspects seem to fit into the domains of the authoritative models for quality assessment, probably because of the minimal focus of the models on long-term aspects in care and service delivery.